For all our anal retentive planning, this I was not prepared for…
Requests for when service/memorial might be, or flowers, or donations.

So first of all here is the plan discussed with Jake. Jake is being cremated.

His ashes will be divided into three portions.

One will be taken back to the Czech Republic so that it can be placed with his ancestors and be near his parents who live in Prague.

Another will remain in the US. We are currently working on these plans but are hoping for a place in Auburn, NH as that is the town we were married in and the resting place of my grandparents who loved Jake dearly. Originally, we had thought some kind of scattering but our son, Bas, has requested a stone/urn so he has some place to call his Dad’s.

The last will be returned to Bonaire for a scattering in the sea to occur sometime in the fall; we are thinking October. We will let one and all know when we have definite plans so you can join us at the beach.

And a slight variation on Jake’s wishes, we are making up small pocket stones with his name on them to be left at various destinations around the world, so that Jake can continue to travel with us. He started a list with the children during his last hospital stay.

The kids and I will likely remain in the US for the summer and return to Bonaire in the late summer/early fall. We have no definite dates but plan on taking our time and spending some of the tough special days ahead like birthdays, Father’s Day and our anniversary close to the support of family.

Anybody that wants to contact us, our home in the US is:
73 Derry Road
Chester, NH 03036
or of course, you can email me at linda@lindarichter.com

Donations can be made in Jake’s name to any number of places. Here are a few suggestions that quickly come to mind.

Support Bonaire, Inc.www.SupportBonaire.org
Near and dear to our hearts, we started this US charity to fund various non-profit organizations on Bonaire.

Massachusetts General Hospital – Melanoma Centerhttp://www.massgeneral.org/give/howtohelp/#outrightMost of Jake’s care was under the direction of Dr. Keith Flaherty at MGH in the Melanoma Center. I cannot say enough good things about all the people that helped and cared for all of us at MGH, Concord Hospital, and NCI in Bethesda. If I started naming names, I would forget someone and feel badly about it. MGH has many clinical trials and researchers working to find a cure.

I delayed posting this blog entry as we tried to reach family members with the news.

As I mentioned in my previous post, Jake suffered three serious seizures in the course of an hour on Monday. The EMTs were able to administer medication to ease the third seizure as they already had him in the ambulance when it started. We are thankful for that.

But these seizures are a sign of the future and that future will be short. We met with a Palliative Care professional from the Elliott Hospital yesterday afternoon. We talked about what the situation is and our expectations. Jake asked the tough question – how long? The answer – days to weeks, not months.

We voiced our desire to have Jake with us at home as long as possible. The kind Lisa gently explained about the seizures getting worse and more frequent as time moved on. Although we could have VNA and Hospice care in our home, it would not be 24/7. When Jake suffers his next seizure, it would take precious time to get the medicine necessary to ease the seizures effects. If we place Jake in a live-in Hospice situation, the medical staff there would be able to address his needs immediately. As one of four family members who witnessed those seizures, I cannot convey how terrifying they were. And add to that Jake was conscious of what was happening to him and his terror was evident. The decision has been made to find a bed for Jake in one of the three NH hospice units. Our house in Chester seems to be smack dab in between them all. We are hoping for the one in Concord, NH as my family lives nearby and that would help during this time.

Now for a little good news, Jake is not in pain and has not required any pain medication. So while he is tired and weak, his humor still shines through. Yesterday, Jake had a Five Guys burger and fries for lunch which impressed the staff. Last night when it came time to order from the hospital menu, Jake said “If this is one of my last meals, I’m not going to eat hospital food!” On request, we got him Haddock Fish and Chip, fried scallops and shrimp with lots of tarter sauce from The Weathervane. Following this thought, I got a Lazyman’s Lobster to make sure Jake’s last lobster wasn’t that icky fried stuff we had on Sunday. For dessert, another trip out for soft-serve chocolate and vanilla twist ice cream. This morning we are slow cooking baby-back ribs for his lunch.

Jake has also started a travel list with the kids of all the places he wants us to visit for him. Of course, the polar bears top the list, although more than a couple dozen places and sites have been discussed.

At this point, Jake is okay to have visitors as long as the visits are relatively short. While he is at Elliott, the visiting hours are 12noon-8pm – more info at www.elliothospital.org We don’t have a time frame for the move to the hospice. Please let me know if you plan to visit so I can keep you updated should anything change.

11am update
We just heard that Jake definitely qualifies for in-house hospice care but currently there are no beds available in Concord, NH. We are looking further afield in Merrimack and Dover.

Today was a tough day. After a nice lunch with Jake’s brother, Dave, Jake started experiencing strong seizures. We called 911 for an EMT/ambulance. Thank you Derry Fire Department for being so kind, fast, and professional. And thanks to Dave for driving the kids and I to the hospital. Thanks to my mom for driving Dave back to his car and taking the kids home, plus coming back to the ER to wait with Jake and I until his room was ready.

We spent most of the rest of the day in the ER waiting on test results. We are thankful – no more seizures at this point. They have started Jake on a new medication aimed at preventing more. Jake and I will be meeting up with various doctors tomorrow as the CT scan did not reveal anything new that may have caused these seizures.

Jake was groggy due to the medications, but demanded a meal in the ER so that is a positive sign. He also ran through his list of the things I should bring him like his special warm duvet comforter and such. At this point, I don’t know how long Jake will be in the hospital.

I apologize in advance to family as this may be the first time you hear about this especially if David has not been able to contact you yet. I just need to write this entry now before tomorrow when I will likely be spending most of my day in the hospital speaking with the doctors.

As you may know from the last blog entry, Jake’s daily intake of steriods was
reduced at his last doctor’s appointment. We had been warned that it might cause
some weakness and we should keep in touch with the doctor with any symptoms that
might develop. Jake has recently been feeling weaker and uncoordinated so we
contacted Dr. Flaherty today to see about raising Jake’s steriod level back up to
relieve the symptoms and get Jake moving better. The doctor readily agreed that
raising the steriods back up would be a good idea. It will likely take a couple days
to see some improvements.

Jake had tried acupuncture before and found some relief from cancer treatment side
effects but we had problems locating another practitioner in Boston when his moved
away. Now that we are in Chester, Linda found an acupuncturist in nearby Hampstead.
Jake has had a couple treatments so far and is looking forward to more at the
Merrimack Valley Acupuncture. Jake has also had some reflexology massages at spa as
well as nightly leg massages from Linda to get some relief from lymphademia in his
right leg (a side effect from lymphadectomy surgery a year ago).

Our Softub spa is finally up and running with the last part, the bench surround,
arriving today. We still have not convinced Bas to give it a try, although the rest
of us have had a dip or two.

As promised, Jake has increased his daily PT in preparation for traveling. Krystyana
and Linda take turns running him through his exercises 2-3 times per day. Our travel
plans take us to Minneapolis, Indianapolis (and Columbus), and ending in Cincinnati
during the second half of May.

Okay, so maybe the title is a bit provocative, but enough time has gone by, with enough changes, that I thought I should post an update.

On the recovery side of things, while I am still not at full energy, I do find that my energy levels are going up by a tiny bit every day, and in fact, I’ve not had a daytime nap in a week. I am making sure not to overdo things, but every other day I go for a pretty long (and slow) walk to rebuild my strength and stamina.

The dry mouth is still here, with some days better than others, and my foods still need to be well lubricated (sauce is good!) or moist for me to be able to consume them.

More importantly, my taste buds are healing, and I’m able to taste more and more foods. I still find myself very sensitive to very tart (acidic) ingredients as well as spice (of the chili variety), but am now able to manage most normal foods and enjoy them reasonably well. Black pepper is fine now too. For example, in the last week, we’ve had Indian, Thai, and Chinese foods, and I’ve been able to eat all but the spicy dishes. Plus, of course, the fabulous creativity of Linda and Krystyana have been a key component as well. For example, last night they made 40 clove chicken (I only had one garlic clove, but two large drumsticks with the lemon garlic sauce the chicken was braised in).

I know I am still quite far from getting the full flavor of dishes and foods, but that will all come in time. And considering where I am now, relative to where I was just three weeks ago, it’s a huge world of difference already.

So, onto the “touching myself” aspect of this post…

When I was starting my TIL/TBI treatment at the National Cancer Institute in Bethesda at the beginning of October, I had a number of very palpable melanoma tumors in my right thigh, and the area the tumors for the TIL harvest had come from felt like someone had buried a baseball in my thigh – it was rigid with small lumps around it as well.

Flash forward to the present, and I can only feel (by touching myself – get it?) just one of the smaller tumors (there were over a half dozen) in my thigh, and the baseball shaped mound in my thigh has gotten quite soft as well. Considering that my weight is down to a svelte 200 pounds (down from 225 when I started treatment) – meaning I have lost quite a bit of weight, which should have made the tumors more pronounced if they were not shrinking, this suggests that some aspect of the treatment is working, and working much more quickly than expected. It’s not clear whether the IL-2 or TIL cells (or the combination thereof) are the cause, but either way, Linda and I are pretty jazzed by these rather noticeable early result. We haven’t said anything publicly sooner (although we noticed the tumors becoming less palpable over a week ago) because we wanted to be sure that trend was continuing (and it is). My doctor did tell me last week (after getting my excellent blood work results), that I continue to be ahead of the curve. So here’s to being an overachiever with a type-A personality!

We’re expecting that the scans coming up this next week at the National Cancer Institute will give us some further insight as to what’s happening internally, but outward appearances suggest that I am slowly heading towards NED. And that means being able to going back to living at home on Bonaire on a more permanent basis once again down the road. Woo hoo!

My battle against melanoma is about to take a dramatic turn today – this time finally in my favor. Everything I’ve been working for since being diagnosed with Melanoma less than seven months ago comes down to today – more specifically – around 1pm today.

My dear friend Cynde Lee found the work of Jerry Kong on-line (please support his work if you can), and my creative family has taken his original image and added some personalized touches to show what a TIL cell chopping down an evil melanoma cell might look like:

A drawing made by Linda, Krystyana, and Bas for me, inspired by Artist Jerry Kong. Shows my TIL cells in Ninja mode assassinating those dastardly melanoma cancer tumor cells in my body once my TIL is introduced mid-day or so today. (Links to the original this image is based on.)

In addition to further encourage my TIL cells to take no prisoners, I have, with the help of many friends on Facebook, compiled the following music play list, which will be started as soon as the TIL cells have entered the wing my room is in here at NCI. The playlist actually goes for over an hour, but the most key fighting songs are in the first 30 minutes after the introductory march. It will about that long for all the TIL cells to enter my body and start their slow inexorable march throughout my body and into every nook and cranny over the coming weeks and even months.

The TIL Playlist

“Ride of the Valkyries” – Richard Wagner

“Eye of the Tiger” – Survivor

“Invincible” – OK Go

“Whip It” – Devo

“One Way or Another” – Blondie

“Another Bites the Dust” – Queen

“I Won’t Back Down” – Tom Petty

“We Are The Champions” – Queen

“Run Like Hell” – Pink Floyd

“Persuasion” – Carlos Santana

“Hungry Like The Wolf” – Duran Duran

“Don’t Stop ‘Til You Get Enough” – Jackson

“Magic Carpet Ride” – Steppenwolf

“Pump it Up” – Elvis Costello

“With A Little Help From My Friends” – Joe Cocker

“Cream” – Prince

“Get Me Bodied” – Beyonce

Copyright laws prevent me from making the music listed here available, but if some kind soul reading this has a way of making this list available through legal sources on-line, please do!

I don’t know if I will be able to make the “Later in Day 0” post based on how I might be feeling after my first IL-2 treatment. But if I can’t, Linda will post to give you an update.

I have successfully finished being exposed to 1200cG (centi-grays) of radiation over the course of the past three days thanks to an awesome team of specialists. And I even have a certificate to prove it!

The wonderful certificate of appreciation I received this afternoon after my sixth and final course of full body radiation. Even got a hug from my radiation nurse!

And still, beyond a dry mouth, and a bit of fatigue, not much wear to show for all that, yet. Hopefully the radiation did its job in killing off all my bone marrow – that’s what the main purpose was of getting the radiation.

The oncology radiologist I spoke to this afternoon after my final treatment commented that I went through the radiation treatment amazingly well, and while he doesn’t know exactly why, perhaps my relative youth, good health, and good energy levels might have helped. He also indicated that there is a chance that some of my organs may have been damaged a bit (which would be fixable or heal-able), but only repeated testing (urine and blood samples) will determine if any such situations exist. So far so good (and please continue knocking on wood – it’s definitely been helping.)

On to what’s next…

One of my favorite movie quotes is from the 1980 version The Blues Brothers:

Elwood: It’s a 106 miles to Chicago. We got a full tank of gas, half a pack of cigarettes, it’s dark and we’re wearing sunglasses.
Jake: Hit it!

There is the absurdity of wearing sunglasses at night, but in reality is it a checklist in the pursuit of a goal. In Jake and Elwood’s case, that is to deliver concert proceeds to a tax collectors office in Chicago, while being sought by the police, and an extremist group.

My current version of this movie quote is:

Jake: I’ve just been radiated and chemo’d. It’s five more days until the treatment is over. I have a couple small bags of Haribo gummi bears, a full jug of water, no idea what I am facing and am covered by a fluffy duvet.
Jake (speaking to myself): Hit it!

Okay. Maybe not as memorable, but to me it has the same feeling. And in my case the ultimate goal is NED – No Evidence of Disease.

To get there I need to get through the next five days of treatment with IL-2 in the form Aldesleukin. From what everybody has said, intensive IL-2, which will start to be administered few hours after my TIL cells are administered tomorrow in order to super-charge the TIL cells and help them achieve their cancer-killing task. (But, as a caution, it will not be clear for at least a month how effective they were, and may take many months to verify total shrinkage and disappearance.)

After the first administration of IL-2 I will continue to receive 15-minute infusions via IV every eight hours until my body just cannot handle it anymore (based on physiological responses related to breathing, organ function, and also on mental function). There are a maximum of 14 doses of IL-2 that will be administered, but my nurse has never heard of anyone that has even gotten close. IL-2 comes with fevers, chills, rigor (shaking during chills), and all sorts of other pretty scary things – more details in the fine print available here.

Whenever it is that my IL-2 treatment ends, I will be a bloated wreck for a bit (an IL-2 side effect is the release of stored water in the body being pulled out of its regular places, resulting in a 20-30 pound “bloat” – and yes, I will have someone take pictures of Puff Daddy Jake :-) ). But I’m betting on being a bloated Jake on his way to NED.

And, speaking of photos – I know I have been remiss in providing images with posts lately, so below are several images to captured over the last week:

Linda and the kids in to my hospital room to keep me company. Here everyone was getting their wifi connections working. Honestly, they really do pay me a lot of attention when I'm not sleeping. We play games, watch movies, talk, and even torture the kids with doing their more traditional forms of schoolwork.

My IV tree the night they were administrating my first dose of Cytoxan to kill my current immune system. Festive!

Cyclophosphomide a.k.a. Cytoxan, close up.

Linda and the kids enjoying a take out meal which I got to try part of with doctors' permission. I managed two wings, a small chunk of dark meat, and two fries before I was full.

Here I am in my hospital room working on this blog post about Day -1, after finishing my final radiation treatment. That's Renaissance Bear next to me.

One year ago yesterday, Linda and I were in Roses, Spain, having the best meal experience of our lives under the personal care of Chef Ferran Adria and his now closed (but still worshiped) el Bulli Restaurant.

It was a lunch event like none other, involving over 35 course, meeting four new foodie-friends-for-life, and it took a mere seven and a half hours (and ended early only because our prescheduled taxi service was getting impatient). And the wine pairings were out of the world – perfect when sipped with a bite of the paired food. Though, Ali (one of our new friends) and I did more than sip our way through a fabulous Alvaros Palacios 2004 Priorat.

As I sit here tonight at the National Cancer Institute in Bethesda, Maryland, working my way through dinner – consisting of peanut butter, jelly, and cream cheese in a low carb tortilla, and needing frequent enough sips of water moisten each bite enough to prevent me from choking on the dryness (since I have virtually no useful salivia production left at the moment), I can’t help but wonder at what a bizarre but still amazing year it’s been. Those of you who know me know I enjoy exploring cuisine and culture – from eating guinea pig in a hole in the wall in Quito, Ecuador, and street food in Fiji and Kowloon, to enjoying the cuisine of top chefs in New York, Hong Kong, and Boston. And yes, even enjoying fried butter at the state fair.

I see my salivary problems (and I have been told that those will be accompanied by loss or change of taste) will last for some time (in addition to the three months of neutropenia). But in adversity, there’s challenge, and being a devout experimenter in the kitchen, I am sure I can come up with some foods that will overcome my limitations and provide both enjoyment and education, once I’m physically able to spend time concocting. The time spent recuperating will also give me a chance to figure out how I might want to change my approach to cuisine (which in the past was to treat it as a visual as well as olfactory art form) in use in the fine art food photography I had started work on last year.

I lead in with the above as a sort of precursor that I’m doing about the same as last night and don’t have much more to say.

I am now totally neutropenic – with nary any neutrophils left to count in my blood. Other symptoms from yesterday persist: Dry mouth, swollen jaw, slight tiredness, and – how to politely put this – intestines that are a bit more aqueous than they should be. But all those are under control.

Considering I just went through another two rounds of total body irradiation (TBI) today, that’s not bad at all. No sirree. I’ve been informed that I’m not the first to have charged through the first six days into the treatment so well, and that folks here remember two other prior patients similarly bypassing the most common and debilitating side effects. The usual trend tends appears to be towards a lot more unwellness early on and then staying that way for the course of treatment and beyond.

So please cross fingers and knock on wood for me some more that I can buck the side effect trends further after tomorrow’s final two doses of radiation. The side-effects induced by those two final treatments will not immediately appear, and might take a few days to manifest. Again, all I can do is wait and see what happen, and hope for the best combination of events (and ask the same of you).

For a recap, Day -1 (tomorrow) is the last day of radiation. Day 0 is, well, THE DAY. It’s when I get my billions of TIL cells injected into my system. I have a carefully thought out music playlist created (with some help from my friends) that I will play to help encourage them to hunt and kill all those nasty growing melanoma cells in my body. I hope to publish that on Thursday before I start IL-2 later in the day, as I understand that once IL-2 starts I won’t be in shape to do much of anything at all for five days.

The duvet Linda mentioned in the previous post, combined with being untethered (no IV), and an Ambien, led to almost 12 hours of sleep, with just a few interruptions. I went to sleep just past 9pm last night, and woke up just past 9am. I did have a fever during the night, but Tylenol helped bring that under control for a while.

This morning when I woke up I had a fever again, and also learned that I had met the requirements for neutropenia – meaning a neutrophil count of less than 500 (based on a white blood cell count of 630).

My nurse calls me an over achiever. First I pee up a storm, and now I’ve gone neutropenic at least a couple of days ahead of schedule.

Because of the fever which is coming and going while neutropenic I’ve been put on a broad spectrum anti-biotic (since I have very little of my immune system left), as well as all sorts of other drugs designed to prevent fungal infections, cold sores, acid reflux, and all sorts of other things. I’ve been told that by the time I finish my treatment in eight days, I will have had more different prescription drugs during the treatment than I have had the entire part of my life until now (since I have no normal prescriptions otherwise).

I was light headed this morning, but figured at least part of that was due to lack of much food yesterday, so I’ve slowly been working to eat a bit more today, and it has helped.

At present, I am sitting in bed (hospital beds are pretty cool with all the different angles they support, but I wish they were a wee bit wider), taking in one of my first two units of blood for the day. Having such a blood transfusion is necessary because my hemoglobin (red blood cell related) counts are way down. I will likely have these blood transfusions every day or so while I’m neutropenic.

And that brings to mind something else. A lot of people have been asking Linda and myself what they could do for us and to let us know if we need anything. Many of you know that we are difficult people to help (and buy presents for) because if we need something we just go out and get it or take care of it pronto ourselves. And with the uncertainty of what my symptoms will be post-treatment (e.g. nausea, fatigue, loss of appetite), we can’t really plan ahead very well either. And it doesn’t help that I will be limited to a neutropenic diet, which means we can’t accept food gifts for three months, however much we’d want to.

But a practical thing that most of you can do for us, for yourselves, and for cancer patients around the world, is give blood and platelets. When I had my platelet infusion last week, for example, I received six units of platelets, given here at NIH the day prior by six different people. And the dozen and a half, or so, units of O-negative blood I am going to be receiving as part of my transfusion also come from individual donors (although not the day before, like platelets). In fact, Linda will be donating platelets tomorrow (you can normally only give blood or platelets every eight weeks, and Linda last gave blood exactly eight weeks ago at Mass General). Thank you Linda and Mona for this excellent suggestion!

Today’s course of treatment continues with my fourth dose of fludarabine tonight, and early tomorrow morning I get my first of six doses of full body radiation – two doses a day for three days. Unclear how I will be feeling after those. However, what is pretty clear is that my immune system will be down to zero in time for my TIL cell administration on Thursday, and that is awesome. Don’t want anything getting in the way of my melanoma fighting cells!

I guess no one made clear to me that I was supposed to be suffering from nausea the morning after my first dose of Cytoxan. When I greeted the doctors on rounds this morning all cheery and upbeat they wondered if it had been administered. Apparently my lack of nausea is something of an anomaly – I prefer to think of it as me being special.

The last 24 hours have been spent peeing and peeing and peeing. I think I’m pretty close to 12 liters of urine output at this point, and I still have another 23.5 hours to go of urine madness. I am required to pee into a “urinal” (not the men’s room kind) – it’s a plastic jug with a handle, and it’s got measures on the side so that the nurses can verify I am meeting my minimum quota of 312 mL per two hour measurement period. I have far exceeded that. In fact, one of my nurses has commented that if I were one of the X-Men super heroes, I would undoubtedly be known as “The Urinator”. Beware his toxic yellow streams!

The issue with peeing this frequently (at times every 15 minutes due to the application of a drug called Lasix (also known as Furosemide) is that you don’t get much sleep, so my biggest side effect from the first 24 hours of my condensed chemotherapy is being really tired. I also had a headache and a small fever which both seem to have gone away after the application of Tylenol.

Linda and the kids kept me company for most of the day, which was very comforting.

As I write this, I’m getting my second dose of Cytoxan. I’m knocking on wood and hoping that nausea and diarrhea don’t follow since I’ve avoided them so far.

I’ve managed to catch a half hour of sleep here and there and that’s helped. Knowing I only have another 23.5 hours of pee madness ahead of me provides me a goal to work towards. And tomorrow night I get untethered from my IV after my dose of Fludarabine, so I can have a night of unencumbered sleep.

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About

This blog started as a place to explore the pursuit of parallel, varied interests in the vein of a Renaissance person in light of society's demand for specialization, but my diagnosis of cancer - malignant melanoma - in March 2011, has changed all that.

For now, this blog will deal with an exploration of how cancer affects one's life and perspectives, as well as share the voyage through diagnosis and treatment, hopefully with a positive outcome somewhere down the road.